What Is Wrong With Me?

I am so sorry you have so much on your plate. Personally, it sounds like it's all coming from Lymes Disease & Migraines and you go through times of tremendous flare ups. I have a dear friend with Lymes. He went to a clinic in Florida for infusions that I believe saved his life. Lymes wears many hats and is hard for a lot of doctors to diagnose. My heart hurts for you. I am praying for you right now. Hugs & Prayers....

@krisjb1 I am a spine patient and wonder if I may ask you about some details about your "collapsing vertebra." Can you be more specific as to what is happening and at what levels and what doctors have said about your spine? I believe that may be a possible source of the headaches, nausea and dizziness if there are some stability issues. Have you been evaluated by a physical therapist for your neck?

If I remember correctly from the last MRI I had about 7 or 8 years ago it was C2-4 mainly that were the issue. At the time it was not causing spinal cord impingement. I am pretty sure it has progressed since then but I am very concerned about the MRI sound level (even with ear plugs) causing increased tinnitus so have not returned for another. I saw a couple of therapists. One didn't do much except sit me on a bicycle and have me pedaling for about 10 minutes. Why? Seemed a waste of time and money. There was no explanation. The other was very helpful and said that although he didn't have any way of directly making things better I should use a traction device. I have the device and have used it to decompress my neck, My husband also volunteers to provide traction. Usually this helps the type of headache I get from the cervical issue. But, the severe headaches I have which put me in bed feel different, more severe, last very long and seem to start differently too. I don't want to be touched when they occur especially since I am dizzy. I don't know if I could even try to decompress my neck at that point. Maybe there have been enough changes in the past 7 years to make things worse but I feel as if the neck issues are not related. I need a quiet MRI to find out. There are none near me as far as my research shows. If I can be assured that a quiet MRI is available I will travel to get it.

Thank you so much. Is it possible that you know what infusions helped your friend? Was it antibiotics or something else? I have had oral antibiotic therapy in the past. They worked-for a while. But Lyme symptoms always came back again.

I apologize....I was wrong. This person got infusions for mold toxicity to get his immune system built back up and it keeps the Lyme Disease controlled. Many hugs to you to get better!

P.S. Mass doses of vitamin c and IV antibiotic were given.

@krisjb1 Thank you for your reply. I wanted to relay some of my experience with my cervical spine. I had a collapsed C5/C6 disc and a bit of disc movement at other levels, but the discs were all intact. I have another condition called thoracic outlet syndrome which causes tightness in my neck and shoulders and actually compresses nerves and blood vessels under the collar bone. That is worse on one side. I got a lot of muscle spasms because of my spine condition and with the unequal tension side to side, it would rotate the vertebrae in my neck independently and they would stay like that. I ended up with a bad episode of vertigo when I looked up at a bird flying over, and the world started spinning.

I also had the headache like you describe, extreme dizziness, face and ear pain, and it does start at the back of the head. It is stretching the muscles on one side in the rotation and they start complaining. This also causes the vertebral arteries that are in the sides of the cervical vertebrae to become stretched which reduces blood flow to part of the brain. When I looked up, I kinked that already stretched artery which started the vertigo. I worked with my p[physical therapist on this and it was resolved by realigning the vertebrae. I know how to recognize this right when it starts, and correct it after working with my PT. I had spine surgery 6 years ago, so my neck has calmed down. I still have the TOS and do stretches for that, and I can get spasms that start to twist my spine to a much lesser degree. There have not been episodes of vertigo since my spine surgery. I also make sure to stretch the incision scar on my neck periodically that gets tight because it adds to everything.

You could have a CT scan instead of an MRI. A CT is a collection of X-rays made quickly that are are assembled into a 3 dimensional image. That may show the doctor a problem, but not with all the detail of an MRI. I know those machines are loud and you have to wear earplugs. It might be worth asking if ear protection similar to headphones could be used in addition to earplugs. I have tinnitus too, and using earplugs alone was OK for me. Nothing got worse.

Do you think a followup with a spine specialist would be in order? I know how bad that feels when you are so dizzy and nauseated that you can't function or even open your eyes.

Thankyou. Your experience sounds very similar to my own and gives me a ray of hope that I have almost abandoned.
Once I did have a sudden onset of severe vertigo when I turned around to look behind my back in my car. Sounds like the compression you describe. Usually what happens is I wake up with a severe issue that puts me down for days, and sometimes it goes on for months in a less major way (I can walk and do things) day and night. That could happen as a result of a sleep position. these things make sense. I just wonder why it lasts so long-sometimes as much as 10 days.

If I don't do something now I cannot continue on because my life is being sapped away to the point where I am not really functional.

I am seriously considering starting fresh with a new specialist. CT scan sounds like it could help diagnose. It would be helpful if I could get pain meds for the headache. At least that would relieve some of the misery but have not been afforded that by dr. I have allergy to certain anesthesia. Before I was aware of this issue surgery kept me "under" for days so I hope to avoid that at all costs. I need to find a PT that really knows about alignment. So far I don't think I have met one. Do they use the CT scan or can they tell by palpation? If the latter I can go right away.
Thanks again, The info about your experience was an eye opener.

@krisjb1 I know what you mean about MRIs. I used to freak out when I had to get one. But I need to have them 3-4 times a year, so…the doctor gave me a prescription for Valium and also taught me meditation. It goes so much easier now! And the awful sounds won’t increase tinnitus. 3-4 MRIs a year for 6 years and my tinnitus hasn’t increased at all. Many audiologists recommend hearing aides for tinnitus because some hearing aides can dampen the sound of tinnitus.
Can you talk with your about ways to make an MRI easier?

...so sorry to read this and what you are going through; i think i got my tinnitus from meds and/or mris because when i used to get them, not that often, NO ear protection at all.... well last one I got I took my own insertable sponge ear plugs and they had some type of thick pads over both ears and the noise was considerably less and if i have any in future will make sure they know to do this again.... i have tinnitus, moderate hearing loss yet hyperacusis, musical ear (not fun) and eustachian tube problems ... so i can sympathize with your not wanting an mri... but they now seem to realize the damage such loud noise can cause in some people.. best of luck and as a p.s. my daughter was bitten by a tick which does not cause lyme but Powassan Virus and was from a ground hog.... if you want to check internet. ... and i think there are other types of ticks too.... dont want to worry you more but so many things it could be, hugs !!! J.